Surgery to allow toddler new start
Ocean Stephen dreams of one day being able to walk, dance and jump high, just like other girls her age.
But unlike most other girls her age, the 3-year-old needs $150,000 to fulfil that dream.
Her Waihi mother is desperately trying to raise this money, so Ocean can have lifechanging surgery in the US in July.
At age 14 months, Ocean was diagnosed with spastic diplegia cerebral palsy — a diagnosis her single mother, 36-year-old Kristen Waite, describes as heart-wrenching.
The condition causes stiffness and spasticity in Ocean’s leg muscles, making walking and standing for long difficult and often painful.
Ocean can only stand and walk short distances using a walking frame.
Without the walker or help to stand, the youngster has to use her arms to pull herself up to a standing position or crawl along the floor pulling her legs behind her.
“As Ocean’s body grows the spasticity is getting rapidly worse and prevents the bones from forming and growing, so starts to cause deformities in the joints,” Waite says.
“Ocean’s right leg now rotates inwards, which affects her hips. It’s only going to get worse unless she has surgery,” Waite says.
On the day that Waite learned of her daughter’s condition a paediatrician said her daughter might never walk or talk.
“My heart sank,” says Waite, describing it as the worst news any parent could get.
But “after a good week of sobbing”, she began to ask more questions and research therapy options, which eventually led her to US paediatric neurosurgeon Dr Tae Sung Park.
Ocean has been accepted as a candidate for his selective dorsal rhizotomy treatment in St Louis, Missouri.
The procedure involves opening up the lower vertebrae in Ocean’s spine and testing the nerve fibres to establish which one is sending the wrong message to her body.
Park will then cut some of the sensory nerve fibres which come from the muscles and enter the spinal cord, permanently removing the spasticity.
Ocean’s surgery will include a three-week compulsory intensive post-op therapy and will be like a “reset” for the girl, who will have to learn to use her leg muscles again.
Waite and her daughter plan to fly to the US on July 25. The procedure is scheduled for July 31, and the pair hope to return home again on August 27.
Eventually, after intensive physiotherapy, Ocean should be able to walk by herself.
Waite fears that if Ocean does not have the surgery now, she may need hip surgery and end up in a wheelchair.
Waite needs to raise between $85,000 and $90,000 to pay for the surgery by June 15 and another $4500 to $5000 for food, accommodation and transport while in Missouri.
Missing this payment deadline would mean another 10 months on the waiting list and further deterioration, she said.
Another $50,000 is needed to pay for the five-days-aweek, intensive, postoperation therapies which Ocean will also need for the next two years, Waite said.
Waite has so far raised $68,000 thanks to a Givealittle page and fantastic support from the Waihi community, which has come on board with fundraising events.
That includes local businesses and schools selling weekly raffles and holding daily auctions, the Gilmour Lake Fair, and a stall at the Splore Music Festival in Auckland.
The Waihi Inspired Kindy, which Ocean attends, recently raised $700 by holding a cafe and bake sale, and OceanaGold has offered to pay for the airfares.
The Waihi Memorial RSA is also holding a trivial pursuit fundraiser for Ocean on June 9.
Dr Park, who visited some of his Kiwi patients in February, told a Seven Sharp reporter that this was the only surgery that would remove the spasticity permanently.